The next item of business is a statement by Kevin Stewart on complex care: out-of-area placements and delayed discharge. The minister will take questions at the end of his statement, so there should be no interventions or interruptions.
14:30
I want to start by making clear my position, and that of the Scottish Government, on this matter. It is completely unacceptable that people with learning disabilities and more complex needs spend any longer in hospital than is medically necessary. For every day that is spent in hospital, the person loses part of their connection with their community, family and friends.
Everyone has the right to a home and an independent life. Scotland is not protecting the rights of people with learning disabilities and complex needs if we have to keep people in hospital when they should be living at home or in a homely environment, with the right support.
That is an absolute priority for me and it is why I am pleased to have the opportunity today to update Parliament on the action that the Scottish Government is taking to make change.
Members might be aware that, earlier this month, I welcomed the publication of the report, “Coming Home Implementation”. The report was drafted by the working group on complex care and delayed discharge, which the Scottish Government established to look into delayed discharge and out-of-area placement in relation to people with complex needs.
The report sets out a clear vision that by March 2024 out-of-area residential placements and inappropriate hospital stays should be greatly reduced. Ultimately, we want to be in a position in which out-of-area residential placements are made only through individual or family choices and people are in hospital only for as long as they require assessment and treatment.
The report sets out a number of key recommendations, which I will ensure are taken forward at speed. Implementing the recommendations is an essential next step in improving the care and support that people with learning disabilities receive in Scotland.
The report highlighted that one of the biggest challenges is to do with visibility and accountability: too often, people end up hidden in the current reporting and coding system. I want to ensure that people are visible in the data and that we move to an approach in which we use data to drive person-centred responses.
The Government will work with experts in the field, including individuals with lived experience, clinicians, social workers, commissioners and providers, to develop and establish a national register for people who are currently admitted to hospital-based assessment and treatment units; living in an unsuitable or inappropriate out-of-area placement; or at risk of placement breakdown.
The register will highlight, to local and national Government, individuals who need dedicated and focused attention to ensure that they are receiving support that works for them. It will improve monitoring at local and national levels and support local areas to effectively measure their progress on reducing delayed discharges and out-of-area placements.
Improved data will provide rich intelligence about how we can continue to work to improve people’s lives and best meet people’s needs. That is something that, internationally, countries struggle to get right. I want Scotland to lead the way on providing suitable and appropriate care in the community for people with complex care needs.
The register will be supported with new bespoke guidance, which will be written collaboratively with professionals and experts who specialise in complex care, to ensure that local areas have the right information and guidance to help in such complex cases. The guidance will ensure that we take a consistent approach across Scotland, to end the postcode lottery of provision. It will also ensure that the register remains dynamic and is regularly updated to provide live information on people’s current circumstances, so that services can respond rapidly and effectively. That will provide the basis for a new national standard to make sure that everyone in Scotland is treated fairly and equally.
To further support swift and effective action, a national support panel will bring together sector expertise to provide an open, collaborative forum that can troubleshoot individual cases in partnership with local areas. The panel will assess progress against the register, identify those who are in most need of bespoke interventions and discuss cases directly with the staff involved to provide advice and support to progress action to return the individual home.
The expertise that will be available via the panel will, for example, help pool resources across local areas, share existing good practice and solutions, and provide additional advice about staffing, training and suitable providers.
Alongside that work, there will be a national peer support network that will provide support to local areas with the planning and delivery of services for individuals with particularly complex care needs. That network of sector experts from commissioning, clinical, provider and lived-experience backgrounds will also be available to offer support and advice in an informal way to any areas that seek additional help and guidance. That is in the spirit of building on best practice and allowing space for innovative and bespoke solutions to be explored and created.
Delivering successfully on the recommendations that are set out in the report will require a high level of collaborative and partnership working. Indeed, I am already aware that colleagues in partner organisations, such as the Mental Welfare Commission for Scotland, share my ambition for delayed discharge and out-of-area placements to be tackled as a matter of priority. Delivering the recommendations in the report will accelerate the momentum towards making meaningful change in how we care for people with complex care needs.
We are starting from a strong position, as there is strong desire in the sector to work collaboratively to make progress on the issue. Enable Scotland and the Scottish Commission for People with Learning Disabilities have both welcomed the report’s publication, with Enable calling it a
“landmark moment for the human rights of people who have learning disability in Scotland”.
While I have detailed the next steps that the Scottish Government will take, that work builds on action that is already under way to address the issue of inappropriate out-of-area placements and delayed discharge of people with complex needs. I would like to highlight some of that action.
In 2021, the Government provided an additional £20 million to integration authorities across Scotland when we distributed the new community living change fund. That money is available to integration authorities for use now, and I expect integration authorities to be utilising that spend to drive the redesign of services for people with learning disabilities and complex care needs in the here and now. We must not be complacent about the urgent need to provide appropriate local care and services for all individuals.
That is complemented by our wider package of dedicated work to address the inequalities that are faced by autistic people and people with learning disabilities. In March 2021, the Scottish Government published our “Learning/Intellectual Disability and Autism: Towards Transformation” plan, which looks at the actions that are needed to shape supports, services and attitudes across the whole life to ensure that the human rights of autistic people and people with learning disabilities are respected, protected and empowered so that they can live their lives in the same way that everyone else can.
Members may already be aware of the Scottish Government’s commitment to introduce in Parliament a learning disability, autism and neurodiversity bill, to strengthen and uphold rights. That bill will include provision for a learning disabilities, autism and neurodiversity commissioner, who will act as an independent advocate to ensure that people can secure the protections of those rights.
Members will also be aware of our commitment to bring a new human rights bill to Parliament, as part of the process of taking forward the 30 progressive, bold and ambitious recommendations by the national task force for human rights leadership. That bill will provide a new human rights framework for Scotland, which will incorporate into Scots law—as far as is possible within devolved competence—four United Nations human rights treaties, including the Convention on the Rights of Persons with Disabilities.
I expect the measures that I have set out to deliver improved community-based support for people with complex care needs and a significant reduction in delayed discharge and out-of-area placements by March 2024. I am confident that members across the floor will support those actions as we work collectively to ensure that people with complex care needs are cared for appropriately across Scotland. I commit to update members on progress with this important issue and on the immediate measures that we are taking to provide local areas with additional tools, new guidance and support so that they can implement the best solutions possible locally to ensure that we do our level best for people right across our country.
The minister will now take questions on the issues raised in his statement. I intend to allow around 20 minutes for questions, after which we will move on to the next item of business. I would be grateful if members who wish to ask a question were to press their request-to-speak button now.
In 2015, the former health secretary, Shona Robison, said that the Scottish Government would eradicate delayed discharge in a year. Seven years later, the Scottish Government is creating a register while patients are suffering.
As a junior doctor, I had a patient suffer for eight months while they were waiting in hospital to be moved because of complex needs. He suffered multiple hospital-acquired infections and was distraught because he could not sleep in the hospital environment.
After seven years, the Scottish Government either does not know the extent of the problem or has ignored it, which is worse. How confident is the minister that the register will be in place by March 2024 and that cases will be greatly reduced? Why has there been a shift in ambition from eradicating delayed discharge to greatly reducing it? Does that mean that the Scottish Government accepts that it is unable to deal with the problem?
The Scottish Government and the Convention of Scottish Local Authorities jointly recognise that we need to make progress in this area. That is why we have agreed to take forward at pace the actions highlighted in the report.
Mr Gulhane is right to point out that, in some regards and over the piece, when it comes to learning disabilities, we have not got this right. That is one of the reasons why we will implement all the recommendations in the report at pace, as I have said. Beyond that, we will eradicate the postcode lotteries that exist in certain parts of the country not only by ensuring that the recommendations are implemented but through our plans for the national care service, which aims to eradicate those postcode lotteries and bring in high-quality care standards for all across the board.
It is essential that we get this right for people with learning disabilities and autism, and people who are neurodiverse. As I have said, I am more than happy to work across the Parliament to get this right. I know that Mr O’Kane, who is on the Labour front bench, is the new co-convener of the cross-party group on learning disabilities, and I am more than willing to engage and collaborate with groups across the Parliament so that we can do our best for people across the country.
I thank the minister for advance sight of his statement, and I agree that it is completely unacceptable that people who have learning disabilities and complex needs are still being forced to live far away from home or are stuck in hospital. Indeed, the situation has been described by people who have learning disabilities and their families as a human rights scandal.
Action has been too slow and the situation has worsened. I pay tribute to organisations such as Enable Scotland and the Scottish Commission for People with Learning Disabilities for the campaigning on these issues that they have undertaken for many years, and for recently launching the #MyOwnFrontDoor campaign, which has called for delivery on five key actions.
I note that the minister has announced that the recommendation to deliver a national register, national support panel and specialist peer network will be implemented, but the #MyOwnFrontDoor campaign has also called for the closure of assessment and treatment units, an end to the practice of sending Scottish citizens out of the country, and the immediate implementation of a community-first principle in the support of adults and children in Scotland who have a learning disability, ending the commissioning of multibed units. How does the minister intend to make the swift progress in those areas that the campaign has called for—that is, by next year, rather than the 2024 timescale that he set out?
Specifically on delayed discharge, we know that more than 120,000 bed days were occupied in 2020-21 for code 9 reasons. That works out at 34 per cent of all bed days. Many of those people died while they were in hospital, not in their own community. What direct and swift action will be taken to ensure that people who have learning disabilities can live in their community with those whom they love, where they have every right to be?
There was a lot in there and I may not be able to cover it all in this short period of time. What I do not cover, I will write to Mr O’Kane about.
First, Mr O’Kane asked about assessment and treatment units. I know that some people have called for a moratorium on their use, and I fully agree that they should not be places where folk with learning disabilities have long stays. However, they have a use as places for short-term placements for assessment and treatment, where appropriate. We should recognise that, but also fully recognise that they are not places where people should be living for a long time.
I recognise Mr O’Kane’s call for swifter action and a faster timescale, but we have to be realistic and to get this absolutely right. I want to move at pace, but I do not want to set unachievable targets. I am sure that other folk feel likewise. I want to see quick change, but I have to persuade partners that that change must happen at pace. I want to see the investment that we have put in utilised quickly, and I want to see the right places for people established across the country.
Mr O’Kane talked about multibed units. I have seen one integration authority use the term “multibed unit” of late; I do not want to see that again. We must provide folks with homes. That may be a shared home when that is appropriate and when people and their families want that, and I am sure that many of us in the chamber could give examples of where that works. We must get away from institutionalisation and the institutional language that is still used by a small minority of people in the country. That is unacceptable, and we will do our best to make sure that that culture changes dramatically over the next period of time.
There is a lot of interest in the statement. I would be grateful if we could shorten questions and responses.
The minister mentioned the community living change fund. Can he expand on the steps that will be taken to ensure that best practice is adhered to in the design of community-based support for people with complex needs, so that we can end the postcode lottery for access to high-quality services in rural areas such as Dumfries and Galloway and more widely across Scotland?
There is best practice out there and we must ensure that it is exported, but I am not convinced that that is happening to the degree that it should be. Emma Harper is right to talk about postcode lotteries: in many places, person-centred services work well for people, their families and communities, but that is not so much the case in other areas. In relation to our mission to move forward, we must ensure that that best practice is in place. The guidance and standards that we set should help to eradicate postcode lotteries, so that we do our best for everyone, no matter where they stay in Scotland.
Today’s statement confirms that, since 2018, the Government has failed to make meaningful progress towards properly supporting those with learning disabilities to live independently in their community. I listened closely to what the minister said to Mr O’Kane. Will he look seriously at calls for an end to the construction of further multibed units for those with learning disabilities, and does he agree with Enable Scotland—I heard what he said—that such units are sadly no longer part of the solution and in many instances could now be perpetuating the problem?
Let me make it clear if I didna make it clear enough in my answer to Paul O’Kane: I do not want any of the money that we are investing to be put into multibed units, and I do not want the use of the terminology “multibed units”. We should be creating homes for people, and we will lay that out very clearly in the guidance.
I have already said that there are homes out there in which there are a number of tenants. Residents are quite happy with those homes and the support that is provided. I would not class those homes as “multibed units”, and I hope that nobody else would, because they are homes.
I say to anyone who thinks that they can go back to the same old that that will not happen, and that will be spelled out very clearly in the guidance.
One of the visions of the “Coming Home Implementation” report is that
“all adults with complex needs have choice and control over the care and support that they receive.”
As the new adult disability payment rolls out this week, what effect does the minister foresee there will be on the ability of adults with complex needs to have that choice and control?
We talk about making the approach person centred. What support is being given to people with complex needs to access the census? Why is it important that they do so?
I will have to write to Ms Martin about the census aspect of her question—and I will do so—as I do not have the detail of that to hand.
The adult disability payment is designed to make things as straightforward as possible. We will always start from a position of trust when it comes to that payment, and it will, of course, have dignity, fairness and respect at its heart.
However, getting the income and support right for folks with a learning disability is not just about the adult disability payment. We should also ensure that folks are able to access self-directed support when that is required. We are updating the guidance on self-directed support to make it easier for folks to access that support, which has often been difficult in some parts of the country. We are doing our level best to ensure that the guidance is clear and that the maximum number of people can access that support.
Ending out-of-area placements was the priority six years ago, in 2016. “Coming Home: A Report on Out-of-Area Placements and Delayed Discharge for People with Learning Disabilities and Complex Needs” was published in 2018. It is disappointing that, after all these years, there has been so little improvement in respect of out-of-area placements.
For the past six years, I have been trying to help families in Helensburgh and Lomond to have their loved ones living closer to home—not hundreds of miles away. The key constraint has been the lack of suitable supported accommodation. There was not one single mention of housing in the minister’s statement. What specific action will be taken, and when, to improve provision of supported accommodation in local authority areas, so that the practice of out-of-area placements can finally end?
The £20 million of support should be helpful to integration authorities in ensuring that the right housing is put in place. That £20 million should be backed by the substantial amounts of money that local authorities have through the resource planning assumptions for the Government’s housing programme.
I have had regular discussions with Shona Robison since I took over my post and, as Ms Baillie knows, I have quite an interest in housing. Local authorities should be using their strategic housing investment plans and their housing need and demand assessments to look carefully at what is required in their areas and to lever in the investment that is needed to bring folk back to their places.
When I was in the Aberdeen City Council administration, we made a major effort to bring folk home from out-of-authority placements, and we made some real gains. That was in the days before there was the amount of housing money that is available now.
The issue is not beyond the wit of anyone. We need to ensure that folk work in tandem to get it right for people throughout our country.
The report says that
“One of the main barriers is a lack of visibility of the population of people with learning disabilities.”
Can the minister set out how individuals’ and their families’ lived experience of complex care needs will be factored into the creation of a new national care service?
Ms Dunbar recognises that in everything that we do in the work and in the formation of the national care service, we must ensure that the voices of lived experience are at the heart of it all.
Many of the stakeholders whom we are talking about today, and the people who represent them, were involved in the review that Derek Feeley conducted and the subsequent consultation. They include PAMIS—the Profound and Multiple Impairment Service—Enable Scotland and others. We are maintaining all those links as we ensure that the national care service moves forward.
We have to ensure that that the voices of folks with complex needs, and the voices of their families and carers, are heard. We will ensure that there is close collaboration as we move forward and co-design the national care service.
I commend Enable Scotland’s efforts to highlight cases of people who have lived in hospital for years or have been offered a care placement miles from home. The Scottish Government is now promising
“a significant reduction in delayed discharge and out-of-area placements by March 2024”,
but it has been declaring that that is a priority for years. Let me get this straight: the new plan is to continue routinely breaching people’s rights for yet another two years. Why is it taking the Scottish Government so long to make the critical changes?
As I have said—I have made no bones about it today—the situation is not good enough and has persisted for too long. However, we will build on the recommendations of the working group, which has put in a lot of work. Beyond that, we will improve data through the register, which will allow us to track much better what is happening to people. That will enable us to ensure that we take the steps that are necessary in order to get it right, when we are not doing well. As I have said, that is backed by the £20 million resource that we have put in. We will continue to look at that, as we move forward.
The key point is that we all need to work together. I do not have all the levers of power, so we need integration authorities, local authorities and others to work together to get it right for people. I am very pleased by how the Convention of Scottish Local Authorities has interacted during the process. I think that we are in a better place now than we have ever been. For me, it is a priority to ensure that we get this absolutely right. I have a record, in a council context, of bringing folk back from out-of-authority placements; I want to do it on a national basis.
I appreciate that the minister is keen to give full and comprehensive responses, but we are getting very tight for time.
It is my impression that of all the tens of thousands of people who, over the past 22 years, have in one way or another sought help from me as a constituency MSP, those who face the longest, most painful and gruelling struggle are parents and families whose children have profound special needs, whether in childhood, adulthood or both.
Does the minister recognise that, in the Highlands and Islands, there are simply not enough specialist facilities to provide appropriate care and that, in some cases, children should be referred to specialist facilities out of the area?
My concern is that such decisions, whether they are taken for children by the council or for adults by the NHS, are often subject to financial pressure, which is often perceived by parents to trump clinical and human considerations. Will the minister review the system of finance so that neither councils nor health boards need to decline placements for financial reasons? Does he agree that that should never happen?
Mr Ewing has been very vocal on the issue on a number of occasions—and rightly so. I know that he always stands up for his constituents.
The national panel must examine the systemic challenges that exist—they are geographical challenges, in some cases—and we need to get better at sharing expertise. Beyond that, we need to lay out what our expectations are very clearly in the guidance.
We also need to bring about some cultural change. In some regards, it is about cost—but not money. Sometimes it costs a hell of a lot to put folk into and to take them out of local authority placements, which is not right, but the human cost of doing so is also sometimes great. We must ensure that when folks are taking decisions it is not the short-term financial cost that is looked at, but the human cost of not getting it right. In the past, we have sometimes made mistakes on out-of-authority placements. I will give an example from my time in Aberdeen City Council.
Could you do so very briefly, minister?
Yes. Folk were sent to Devon and Cornwall, which was not right for their families, not right for the people themselves and certainly not right for the public purse.
The “Coming Home Implementation” report states:
“Everyone should understand their rights, and be fully supported to take part in developing policy and practices which affect their lives.”
We have heard from families that they were not aware of what rights they had when their loved ones were placed outside their area. What action is the Scottish Government taking to improve rights awareness among people who have learning disabilities and complex care needs, and among their families and carers?
We need to ensure that everybody’s human rights are upheld. We have a job of work to do in terms of ensuring that everybody knows what their rights are. I spoke in my statement about our plans to embed human rights in legislation; we will do that.
Beyond that, we need to do much better on advocacy; we need, as we move forward, to ensure that folks have the right to obtain advocacy and the right advice. There is more work to do on that, and it will be done.
I, too, refer to the report, which says:
“The framework is also designed to ensure that the needs of people with learning disabilities and their families drive the local commissioning strategy”.
That is quite official language. For all the families who are on the front line, what—in plain speak—does that mean and how will it be achieved?
In all that we are doing in social care at the moment, I want, quite simply, the voices of people with lived experience to help to shape services, as we move forward. In the case of the national care service and the proposed community health and social care boards, that means that folks with lived experience will sit at the table and have a vote on how things go. Since coming into this job, I have talked to many folk with learning disabilities and their families, and they feel that they are not listened to enough. We need to do much more, so we will.
The minister’s statement rightly points out that improved data is needed to quantify and measure work to improve people’s lives—especially people with complex needs who are lost and tied up in hospital. The register will make some progress towards that, but it is concerning that work has not already been undertaken to join up support and care for vulnerable individuals.
Of the people whose release from hospital was delayed by three days or more in December, a quarter were people with complex needs and learning disabilities. Is there a case for expedited progress and real action, rather than more promises? Such promises have noble ambitions, but no instinct for delivery.
I thought that I made it clear in my statement that I want to move at pace and to get this absolutely right for all the folks in our country with learning disabilities, for all their loved ones and for their carers. As we move at pace, I am more than willing to come back to Parliament regularly to update colleagues on how we are progressing with all that.
That concludes the ministerial statement. There will be a short pause before the next item of business.